Wednesday, March 25, 2009

MS and Me: A Life Bisected, and Dissected - Part One

Multiple Sclerosis has quite obviously had its way with me physically, and it keeps hammering away, day in and day out. But it's also had effects on me that aren't as immediately apparent, effects both psychological and philosophical, that have led me to reevaluate some core values and the way I live my life. Dealing with this disease has forced me to recognize insights that I might never have otherwise gained. I'd never say that multiple sclerosis has had a net positive effect on me, because this disease is a nothing but a stinking, rabid dog from Hell, but it has led me to some important and life-changing realizations.

In effect, getting MS divided my life into two very distinct parts; my life before multiple sclerosis, and the time I've spent since, with the most dramatic changes coming when I was forced to stop working and go on disability in 2007. The day I left my office for the last time was a striking line of demarcation between the life I had known, and a new life that would be spent with increasingly limited mobility and an almost unlimited amount of time on my hands.

It's a strange experience, to suddenly be faced with the prospect of days and weeks and months and years with almost nothing to do. There are doctors visits, the requirements of daily living (eating, bathing, obsessing about Wolf Blitzer's name, etc.), and occasional socializing with friends and family, but other than that I've been largely left to my own devices. My wife works 9-to-5, so on weekdays it's basically "we three", me, myself, and I.

In the months immediately following my going on disability, I was thankful to find a very large time eater in the form of "Star Trek: The Next Generation". One of the cable networks was showing three episodes a day, so I spent many hours accompanying Capt. Picard and my other friends from 24th century on their adventures zipping around the universe. Maybe not the most constructive use of my time, but I did manage to develop an ungodly hatred of the Romulans.

Soon enough though, I ran out of Star Trek episodes, and found myself spending time reflecting back on my life before disability. From the vantage point of my newfound idleness, I could look on my previous life as an entity unto itself, with a beginning, middle, and end. Just as a person can't review a movie while in the middle of watching it, it's very difficult to take a broad view of your life while you're in the middle of living it. The self-perpetuating narrative flow of all of the ongoing elements of life keep a person primarily concerned with the present and future. Once on disability, though, my present was only a void to fill, and, given the insidious nature of multiple sclerosis, the future wasn't a place I cared much to think about...

10 comments:

This narritive is particularly interesting for me, regarding the disability decision. When you get hit by a car or have a stroke or heart attack, the disability decision is not about "when", but just "if". With a progressive disease like MS both When and If come into play. I'm struggling with that decision now. Your insights are welcome. It appears that Blogging and video production are helping to fill you days with constructive activity.

Marc, - A very good writer you are and so many of those with MS and other diseases can assimilate to your situation, very easily...This is why I will again feed others to your site, this blog site. - As I know that with your videos and words, you can help many to feel better in how that must live with their illness.Have a great day...Stuarthttp://wwwmsviewsandrelatednews.blogspot.com/

Thank you for saying what I have been trying to say! It's refreshing to be able to say out loud that MS is a beast. I was made to feel guilty recentlyat a website because I *was letting MS win*While all of the *I have MS, MS doesn't have me* talk sounds good, it's not real. I will never be the same woman I was before. Not many people understand that, nice to know I am not as alone as I thought.

forget the MS, I want to hear your thoughts on Next Generation vs. the original. I finally gave up on the Trek universe after a few episodes of "Enterprise" - a 30-year commitment to a fictional universe down the drain! But I'm hoping the new prequel will get the juices flowing again.

Fascinating/entertaining as always ... can't wait to read the next part. Just heard from my old pal M. Stone and apparently he's watching your videos - Hollywood here you come...

Anonymous: the decision to go on disability is one of the hardest any person can face. At some point, it becomes a question of diminishing returns. When the mere act of going to work is in itself debilitating, it's time to let it go...

Stuart: thanks for the kind words. The resources you provide to the MS community are invaluable. Big thanks go out to you...

Melinda: I will put together a post on the events that led to my going out on disability. It wasn't as hard a choice for me as it is for many, in some ways my hand was forced...

anonymous: there is no way around it, multiple sclerosis takes from us much of what we hold dear. The disease is a felon.

creative: you are certainly not alone. I have a pretty low tolerance for the "flowers and rainbows" view of the disease. Multiple sclerosis sucks.

Jon: as intelligent as the "next generation"was, the original had Spock getting horny, the Cooms versus the Yangs, and three disembodied brains betting on the outcome of gladiatorial combat. How can you beat that?

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...